Stories,narratives,scenarios in Medicine

Representation and theatre

Finally, a different kind of envoicing in encounter is discussed in an article about using participatory theatre with medical practitioners, where audience members are drawn into participating and speaking for both the patient and others involved and implicated in a chronic problem’s treatment.

For whereas Narrative Medicine has emphasised the importance of attending to the patient as narrator and the clinician as co-constructor of narrative, many aspects of the medical encounter are actually multidimensional, formed of mutual and common interactions: intersubjective dynamics and affect that can be ‘played out’ in theatre.

Using theatre in this way draws attention to the power dynamics of the patient-clinician interaction: issues of control and ‘noncompliance’, challenge to authority; and also to the possible problematics of ‘empathy’: to negative intersubjective ‘affects’ which are usually unacknowledged, such as irritation, disgust, dislike – critical and judgmental reactions so far from the model of empathy!

And so in a final dialogue, a professor of medical ethics and her theatre director daughter explore the commonalities and differences between the two practices.

Narrative ‘identity’

Narrative identity presupposes a storied life; broken and fragmented narratives show rather some of the layers that go to make up a narrative identity: the master and meta narratives that frame and structure experience; the counter and cover stories formed in times of trial. Such ‘master’ and ‘meta’ narratives come from social convention and sensibilities: concerning ‘health’; gender; medical intervention; behavioural norms …

In constructing any narrative, ethics demand that ‘selfhood’ be respected, even or perhaps especially when dealing with conditions affecting memory, recall or a unified sense of self. For ‘identity’ is a tricky term, connoting two overlapping but not identical (sic) ideas: of unique ‘quiddity’ and of ‘constant sameness’: yesterday as today. Memory plays an important role in constructing and maintaining both; certain of the cases referred to deal with conditions where memory impairment or fragmentation or trauma repress or debilitate the ‘storying’ self. In so doing, such cases ‘beat the bounds’ of the model of unitary identity.

All the cases here raise issues for identity and narrative studies, for instance by drawing attention to such terms as ‘the storied life’, ‘performative identity’ and a ‘narrative arc’. But they also raise the issue of the representation of trauma, repression, violence and mental illness. They involve encounters with those who are dis-envoiced in one way or another in a clinical setting, whose ‘storied selves’ have to be represented. We question what is the epistemological, educative, ethical, therapeutic and even, perhaps, re-traumatising effect of being so re-presented.

Frames and foundations: narratives challenging norms

This, our first Medical Humanities Special Issue, came out of several important international conferences together marking a platform for what might be called ‘Narratives of Health & Sickness’. The first two well established and influential projects, Patient Experience ¹ and the Hearing Voices, ² have been literally crowdsourcing accounts of those with all kinds of conditions, including chronic, multiple, complex, difficult to diagnose, ‘psychosomatic’ and those often misinterpreted, dismissed or over-diagnosed and -medicated.

These narratives are of immediate importance in showing medical practitioners how to ‘walk in their patients’ shoes’. They inform, or at least should inform, practice, for instance in giving voice to things that were missed in the rush to treat or in received wisdom about the practice of care.

But perhaps more importantly, both projects challenge as well as inform the boundaries and purposes of medical practice; by envoicing those with ‘conditions’ they firstly locate the person and the personal: the human experience and the life-storying of the ‘case’. And equally importantly, they situate those conditions within normal and normalising society rather than only in medical textbooks. As with the Hearing Voices project – recording the experiences of those who hear voices while at work, in nature, writing, praying – there are accounts of people who do not see themselves as ‘cases’ and indeed challenge the current diagnostic basis of medicine and psychiatry.

The raising of such issues challenges the medical profession to situate itself in a more complex world, rather than in a discrete ‘clinical’ sphere, where a white coat separates the doctor from the patient. Deborah Bowman makes the point that if medicine were to attend (as she would argue it should) to its place in ‘our norm-constructing, boundary-marking society’ it would make better sense of itself and its purpose. (As the original Hippocratics did, drawing their informing models from and contributing to the fervent intellectual debates and discriminations of the time). Perhaps she challenges medicine to attend to and situate its decision making processes within society’s narratives of medicine? These projects and the seminal conference on Broken & Trauma Narratives: ‘Broken narratives and the lived body’ http://artsonline.monash.edu.au/broken-narratives/ (discussion at which stimulated and frame many of the articles in this issue), have wide implications for medicine, medical training, and medical ethics but also for our norm-constructing, boundary-marking society, some of which are explored in this special issue.

Narrative vs. pathography … and pathologising

Such narratives – as exchanged by medical professionals and medical ethnographers at the International Conference on Narrative of Health and Illness – ‘offer a strong counter-balance to the dominant biomedical focus,’ according to the conference organisers (http://healthnarratives.org/); a focus based on pathography: the tracking and mapping of the process of the disease (rather than of the sufferer). As such they seemed to me to have rich implications for the Humanities as well as for Medicine, discussed in my blogs: http://artsandhumanities.org/conferences/international-conference-on-narrative-of-health-and-illnessprogramme/ & http://artsandhumanities.org/conferences/international-conference-on-narrative-of-health-and-illnessprogramme-day-2/. The ‘dominant biomedical focus’ is indeed challenged by so many patients’ accounts of their experience, illustrating that a biomedical diagnosis and treatment plan is a tiny element in what is needed for ‘recovery’. And that recovery from the illness is very far from becoming ‘whole again’, recovering their ‘self’.

The ‘patient experience’ stories – rigorously and validly researched and analysed but resoundingly not pathographies – have multiple uses: as medical ethnographies, to exemplify forms of treatment and occasionally of maltreatment; to narrate the experience from the ‘receivers’ point of view; to point to other ‘non biomedical’ aspects of care and cure; to share the sheer diversity of bodies, persons and personalities bundled together as ‘cases of x’ …

Universals shown in the particular, which is what humanities narratives, properly [sic] constructed, do.

A ‘narrative medicine’ approach, where ‘Stories Matter’, sets itself up against an algorithmic ‘diagnostic’ framework, seeing illness not as a discrete, bounded event but as ‘interrupting’ and reforming life and identity, a life and identity that can only be comprehended in a rich or ‘thick’ text. Only through this approach can the ‘pathologising’ process be interrogated: of special importance to this Special Issue were the ‘cases’ that challenged public, and public health care’s, perceptions of the boundaries of medicine; such as those recording and challenging attitudes to behaviours classed as ‘pathological’ or ‘deviant’. Behaviours like addiction, drug & alcohol ‘abuse’ – terms which have, or should have, rich ironic implications about norms of behaviour and their infringement.

It is here that a new element comes in – of those seen not as having ‘a normal, healthy, whole life’ interrupted but as those whose life is complexly damaged and difficult if not impossible to restore. In this Special Issue, Kesherie Gurung’s ‘Bodywork: self-harm, trauma, and embodied expressions of pain’, a New Voice research essay building on Amy Chandler’s seminal work, ‘Narrating the self-injured body’ (Medical Humanities 2014;40:111–116), discusses some of these multifaceted dimensions of an increasingly prevalent, almost ‘normal’ behaviour: self-harm. Self-harm is just one of these problematic conditions – such as ‘hysteria’ – which has been reclassified in each iteration of Psychiatry’s diagnostic-criteria-establishing Diagnostic and Statistical Manual of Mental Disorders (DSM), (currently, in DSM 5, as ‘NSSI’ – non suicidal self-injury). This article opens up narratives of [self-]care which reveal the problems of those at the sharp end of judgmental treatment, at the hands of those whose role is to at least care for, if not heal, those in mental and bodily pain.

It also opens up the question of what it is to write a ‘pathography’ of what can be seen as a condition but also as deficit, traumatised or pathologised behaviour or an embodied response rather than a record of the progress of a disease. And in calling attention to judgmental treatment, it reveals the irritation of medical professionals when faced with ‘pathologies’ that they cannot track and remedy.

Even more challenging to the medical profession, suggests Catherine Belling in A Condition of Doubt: The Meanings of Hypochondria (Oxford UP, 2013), are those particularly irritating and troublesome ‘clients’ labelled by clinicians as hypochondriacs. They and their repeat appointments are extremely rebarbative, for they refuse to be reassured by ‘state of the art’ tests which come back as clear, sure that something is wrong that the current ‘state’ cannot pick up. They are fundamentally questioning the current state of medicine’s diagnostic basis, challenging the competence and validity of clinicians’ professional practices. Like NSSI and a wide range of ‘deviant’ behaviours, the current DSM has a label for these: excessive health anxiety; like NSSI and the wide range of ‘disorders’, the label pathologises a behaviour rather than seeing it as arising from an individual’s reaction to a dominant social model or paradigm.

Mutual interactions?

This Special Issue we hope presents a range of reflective, implication-rich broken, brokered and trauma narratives which challenge both issues of literary life-writing and of narratives of care and cure, both representations of medical and psychiatric conditions and the ethics and affect of representation.

For properly explored, Medical Humanities research informs both domains – both medicine and humanities. Ann Jurecic in Illness as Narrative (Pittsburgh UP, 2012) has pointed to the expansion and challenge to literary theory and narrative hermeneutics that Narrative Medicine has demanded of English studies, pointing to the complexities of ‘real life’ narrative presentation, of the implications of the evident (sic) cultural formation of narrative possibilities for humanistic understandings of such as ‘self’, of identity, of will, of ipseity.

This Special Issue also challenges Medical Humanities to go beyond using ‘medical’ theatre instrumentally (to raise awareness of and bring out of the closet conditions like dementia) or only in scenarios in medical training, in order to explore wider intersubjective and ethical issues.

Meanwhile, theatre has been set a parallel challenge: experimental, verbatim, physical and cross over performances grow exponentially, making theatre out of as well as exploring medical and psychiatric conditions. But there may be ethical concerns: The Sick of the Fringe strand of the Edinburgh Fringe Festival has drawn attention to the effect on the actor of performing their own experiences, disabilities or ‘conditions’. And while various theatre makers – including prize winning plays like Edson’s Wit – have seen the affordances of using a clinical setting to explore the ethics of medical and psychiatric interventions, we hope here to challenge Performance Studies and performers to work with medicine and psychiatry to explore theatre’s ‘crossing the footlights’ dynamics and effects. We hope that this will expand understanding of central issues common to both, such as ‘affect’, ‘embodiment’, ‘empathy’ …

Stories matter; story matters in health and illness

The drive towards teaching of Narrative Medicine in medical schools (originally in the US, but increasingly in the UK and Europe) is the perceived need for health professionals to be sensitive to relationships of caring as well as curing; to develop an understanding of narratives and their expression and suppression and to develop skills of attentive listening as well as diagnosing.

Initially the texts chosen for study were ‘illness memoirs’: memoirs constructed after the fact following traditions and experience of literary biography, and essays like Virginia Woolf’s ‘On Being Ill’ – literary texts but discussed as personal accounts, as transparent. (The dangers of treating literary texts as transparent were brought home to me in my first contact with Narrative Medicine, at a conference where a thoughtful junior A&E/Intensive Care doctor related how he was brought up short by the protagonist carer in Ishiguro’s Never Let me Go. She had made him re-evaluate some of his professional practice for its lack of ‘her empathy’. My response was that I would infinitely prefer to be treated by him than Ishiguro’s Kathy! For Kathy’s ‘empathy’ is dystopian, I proposed, and written by an unreliable narrator whose sentiments are cold enough to raise the hairs on readers’ necks.)

Ishiguro’s novel, as many of the texts studied in Literature and Medicine courses, finely opens up the question of the construction and constructedness of terms we need as a society to evaluate: ‘empathy’, as here, the limits and negative possibilities of which need exploring and finely evaluating. And also ‘sensibility’, ‘care’, ‘end [both senses] of life’… These are the terms of art of the Humanities: this is what we do. For art, literature, music, film can all be crafted to communicate and witness to human experience, and as here to its darknesses and distressing aspects. See, for example in this Special Issue, Senka Božić-Vrbančić, Renata Kokanović and Jelena Kupsjak’s exploration of ‘the politics of sentimentality’ in ‘Narrating suffering in the film Sick’; Agnes Sile and A. Larkin's ‘Mental illness within family context: visual dialogues in Joshua Lutz’s photographic essay’; Ana Dragojlović’s article ‘Knowing the Past Affectively: Screen Media and the Evocation of Intergenerational Trauma’; Patrick Zuk on ‘Myaskovsky’s music as post-traumatic discourse’.

These explore, but as representation can and perhaps must, also bear witness to those darknesses, those traumas which can leave the experiencer disenvoiced, silenced, unable to narrate. For ‘illness and trauma can … represent a break not just with a particular form of representation, but with the possibility of (linguistic) representation at all … and thus become broken narratives’ (Brockmeier in Renata Kokanović’s editorial article ‘Listening to what cannot be said: Broken narratives and the lived body’). She discusses there how people with neurological illnesses, psychiatric diagnoses, histories of trauma, cognitive ‘impairments’ and neurodiversity (people diagnosed with autism spectrum disorders) might produce ‘broken narratives’.

This was the central idea in the Call to which the papers presented at the ‘Broken Narratives and the Lived Body’ conference http://artsonline.monash.edu.au/broken-narratives/ responded: narratives assembled by the ethnographic researcher of mental and/or physical pain, of trauma, of disenvoicing conditions. Such nuanced accounts – ethnographic or, as in this issue, creative and artistic – of the specifics of such disenvoicings have implications for trauma and identity studies, and for those dealing with and making diagnostic accounts of potentially disempowering, contested conditions. I used ‘explore’ and ‘witness to’ deliberately: in this issue we respond to the challenges and implications of collecting and recording ‘the patient experience’ and especially the responsibility and formal problematics of recording and presenting narratives of those disenvoiced by trauma and/or sometimes by the very act of ‘taking the case history’. For, as Rita Charon made central to her work on both Narrative Medicine and Narrative Bioethics, to narrate or represent another’s story brings an ethical responsibility, that of ‘honouring the stories of illness’ (Rita Charon, Narrative Medicine: Honoring the Stories of Illness (Oxford UP, 2008); here taken up by Sara Ryan, ‘Honouring a life and narrative work; John’s story’).

This article in particular raises a little-considered aspect: the effect of having a narrative created for as well as about one. In reflections on a series of interviews with John, Sara Ryan considers issues of the problematics and proprieties of drawing out and giving back an account, here of autism. Many of the issues around labelling may apply to such ethnography – the particular becomes, rather, a diagnosis – and there are always concerns that in recording ‘the patient experience’ one is asking for a reliving of a traumatic experience and the consequential hardening of identity.

From stories to case notes or vice versa: challenging the boundaries of medicine

The basis of a clinical encounter is the taking of case notes, a tradition that goes back to Hippocratic practitioners of the 6th century BCE: notes of observation of symptoms, progress and contingent particulars and the construction of a narrative of cause and effect. As the contemporary Sophists well understood and taught, such accounts, logoi, come to be seen not as a carefully constructed description but a reasoned and reason-bound chain of argument, with a positivist, truth-establishing status.

There has of course been a consensus that ‘clinical excellence’ is based in rigorous evaluation of the medical evidence-base. But there is continuous and continuing discussion of the basis of diagnostics – of the algorithmic approach, whereby conditions are defined and labelled if the patient qualifies (!) by having a high enough score across various ‘axes’ of symptoms. And, contrarily, of the problematics, validity and generalisability of descriptive accounts. The debate over discriminating complex or multiple conditions in particular shows that data-driven objective analysis is not what medicine is about. Bodies, people, environments are always interacting and changing; clinical appointment notes are a snapshot with often a ‘best match on the chart’ approach to fitting the individual case into a pre-existing framework of diagnostic and available treatments.

(Naomi Podber at the conference, made the case that patients presenting with ‘medically unexplained symptoms’, variously called ‘hysteria’, ‘Yuppie flu’ and such, are often ignored, derided and disempowered by hostile attitudes to the very condition for which they are seeking help. Hers is a powerful plea for the medical profession to have the grace and tact to embrace an ‘epistemology of ignorance’: an interrogation not just what we do not know but how we come to not know; to demand an exposure of systematic practices of suppression informed by social, political, economic, and cultural forces.) This is to suggest that there is a willed and wilful ignorance masked by labels and ‘syndromes’, because unlike Socrates the – outcomes and results based – medical profession has no interest in knowing that they do not know …

This goes beyond a call for medicine to have ways of dealing with what the philosopher Ronald Barnett called ‘supercomplex’ systems: where competing epistemological paradigms provide multiple complexes of explanatory frameworks. It both demands and recognises the huge task facing those training medical professionals: that they have to become profoundly epistemologically and ontologically reflective.

[This is a plea that those in the academic fields of ‘Literature and Medicine’ and ‘History of Medicine’ themselves face up to that demand, in helping today’s practitioners view their present epistemological frameworks as differently inscribed in other cultures’ practices and linguistic expressions, rather than taking the Research Council and Foundation’s money to research a narrower academic question. And that rather than locating the importance of the research in findings and an abstract of the problematics of the research, there must be a reflective executive summary/blogpost/essay about the informing epistemological processes, to help medical practitioners and trainers develop a comparatist lens to their current epistemological and practice-based frameworks.]

One of the jobs of the medical trainer is to bolster what medical trainees can do while living with uncertainty. And perhaps some of those ‘uncertainties’ serve to mark out the borderlands not between sickness and health but medicine and society, a borderline properly presided over by the god Hermes, by the techniques of hermeneutics …

So this Special Issue also hopes to challenge medicine to look to its own boundaries: to use humanities frames of understanding arising from literary, ethnographic, biographic and theatre analysis to explore its own practices, interactions and ethics; its understanding of such terms as ‘empathy’; its language (what is an ‘uncompliant’ patient?) and its evaluative judgments; and to use such understandings to map its terms and its boundaries.

Why stories matter: from narrative hermeneutics to narrative heuristics

It was Arthur Kleinman’s The Illness Narratives: Suffering, Healing, and The Human Condition (Basic Books, 1989) which first pointed out that such stories – of those who, as Susan Sontag memorably said, hold citizenship in the kingdom of the ill, for ‘illness is the night-side of life’ – beat the bounds of the human condition.

Arthur Frank’s similarly seminal The Wounded Storyteller: Body, Illness, and Ethics (University of Chicago Press, 1995) pointed to the fundamental nature of storytelling as making meaning of lives, a nature revealed when the arc of the story is disrupted, when expectations and understandings of the self and of what life should be are jaggedly vitiated. What is interrupted is ‘normal’ expectations about what life is, what health, wholeness and identity are, which are usually unspecified and unstoried; interrupted life stories, rather, show up as deficits the norms and expectations that are ‘norm-al’ and that cultural narratives ‘norm-alise’.

For illness stories, stories of those lives ‘interrupted’ by fundamental events which change the course of life, say a great deal about that life-course. Looking at the frames of a ‘whole’ storied life – from cradle to grave [sic] – is to question those frames in a way similar to that in which those writing life-stories questioned the biographers’ and hagiographers’ procedures. A hero tale, saint’s or politician’s biography has a shape and narrative arc. It is a significance-highlighting narrative, avowedly constructed.

Frank points to what can be seen, rather, in reading ‘interrupted’ lives: accounts of lives whose narrative trajectories are broken into by serious illness, accident or mental or physical trauma. The disruption of the ‘imagined futures’ that drive our everyday decisions reveal the shape of those futures.

This is to challenge the role of the formal analyst of narrative, fable, folklore etc., moving from a concern with narrative hermeneutics (form, function, structure of narrative) to narrative heuristics: what can narrative suggest about the structures not of itself but of the way society constructs the cosmos, humankind, human life, human possibility?

For instance, a muthos, a traditional hero folk story, has its telos, its fitting conclusion: one that fulfils, gives meaning and direction to and explains both life and ‘end’. Whether the story has or achieves closure, such that there is a fulfilment of purpose, a satisfaction that the end is as it should be, or whether it has a disrupted closure, where the narrative’s impact rests in its denial of what is expected and needed, the story shows the framing understanding of ‘the order of things’.

It has been proposed (e.g. by Matthew Syed about sporting and athletic motivation and achievement) that the power of the basic hero muthos, then as now, is the simplicity of the ‘end’: to conquer the mountain, to achieve the mission, to win gold. Many heroic qualities are needed: daring, endurance, specific skills but the common factor is that there is a single ‘end’ or telos and that end is teleological: it provides in the hero the energy and focus to achieve it.

Other examples are the warrior’s heroic end, as in the Iliad, where the telos of a man’s life is to carve out an individual identity, to individuate from animal or natural species, to have an individual story that will be remembered. Another is that often repeated in different cultures and political systems, the patriotic heroic death: ‘dulce et decorum est pro patria mori’: it is sweet and fitting to die for one’s country. In many cultural framings a woman’s ‘end’ is sex and procreation; a disrupted closure is when the story goes on past the wedding day or birth of the heir.

But a new framework is needed in literature to go beyond the novel’s ‘Reader, I married him’ or for the epic’s Odysseus who neither triumphs nor dies in Troy but needs to ‘reintegrate’. And a new framework is seemingly needed for medicine also, when ‘life at all costs’ or ‘life of any quality’ seem to be insufficient as well as costly goals; when medicine can intervene to prevent or enable what society considers to be natural ‘ends’, such as childbirth or [premature] death …

An interrupted life, whose narrative trajectory is broken into by serious illness, accident or mental or physical trauma, comes to what the Greeks called – both in the theatre and in medical textbooks – the krisis, the turning point. In Greek medicine, the doctor’s intervention is a double-natured pharmakon, which can kill or cure depending on its administration. The ethics of ways of effecting the telos, the proper outcome, were debated in the Greek theatre, where different outcomes are imagined and negotiated.

Today as in Ancient Greece, stories of those interruptions, those crises, demarcate and beat the bounds of the human experience. Today, such crisis stories are ‘played out’ in the competing narratives put forward to the ethics committee, in the decisions taken about test cases (sic). (In, e.g., Rita Charon, Stories Matter: The Role of Narrative in Medical Ethics (Routledge, 2002); Deborah Bowman, BBC Radio 4 series ‘Inside the Ethics Committee’ and ‘Test Case’.)

That is to say that in the accounts of and decisions about a critical and life-changing situation, much is also revealed about that life, about the life-story that has been interrupted. Including the expectation, and demand, that both life and the story of the life should have a fitting conclusion – a pressing concern in end of life care decisions.

And for Narrative Humanities, rather than looking with the ‘hermeneutics of suspicion’ (inculcated in ‘classic’ narratological skills training, which posits the text as needing to be scrutinised and dissected), illness narratives importantly raise ethical questions: the individual’s life as well as the unique contingencies of the ‘interruption’ must be respected.

In The Wounded Storyteller Frank identifies three basic narratives – or rather ‘after narratives’ – of illness: ‘restitution’, ‘chaos’ and ‘quest’.

These three provide different frameworks and meaning-makings of the interrupted life: restitution narratives anticipate getting well again and give prominence to the technology of cure. In chaos narratives, illness seems to stretch on forever, with no respite or redeeming insights. There is no sense of the order of things or attempt to make a narrative of how one fits or doesn’t fit it. Quest narratives are double-edged, bringing a determination to find an explanatory causal chain. They can bring transformational energy to embrace the new future, but can also become a determination to blame self or others for crucial failings, looking, like a Greek dramatic chorus, to identify the fatal mistake (hamartia) which brought on the tragedy.

All three have implications for reading – and importantly coming to judgment about – life-narratives and the shape and implications of having a narrative identity:

Restitution can be seen as a ‘defence’ or ‘cover’ story that comes with denial of other outcomes, a story of an imagined future that has to be fulfilled even in the teeth of other offers (e.g. of, instead, a ‘good death’ or the story of a different bodily and cognitive ‘self’).

The hero quest can be self-absorbed as well as self-absorbing, in denying others’ stories; it can also in its sense-making quest involve a need to track down a source of blame; wreak revenge or justice on an individual cause in a super-complex, multiply interacting environment. Is everyone the auteur of their own film?

And, finally, chaos is not a narrative at all, rather it comes from a sense of the radical incoherence of the cosmos, where no temporal (of before and after) causal (of post hoc propter hoc), or identity (of the self having an integrity and a sameness yesterday and tomorrow) narrative is possible.

It is important to understand the need for each of the three: to see from these would-be or vitiated closures to the individual’s stories what is revealed about narrative identity.

Narratives of transition

In addition to ‘interrupted’ lives and life stories, the Patient Experience project gathered valuable, to-be-explored facets illuminating by the ruptures and deficits, ‘life’ as well as ‘illness’ stories. A wide variety of stories of transition and of adjustment illuminate the borderlands: [denied] ‘transitional’ narratives speak to the imagined future self – as mother, as adult, as parent – while narratives of adjustment speak to narratives of identity, integrity, sexuality, health, ‘proper’ youth or aging seemingly precluded by a chronic condition.

For instance, Patient Experience cases such as ‘Preserving a masculine self in face of illness and disability’; ‘chronic pain & dementia narratives about preserving identity & integrity’ and more had implications beyond those for medical sociology and clinical and other training. These could and should be treated as central Medical Humanities texts: to be read and analysed neither only as ‘testimony’ or as ‘literature’ but also as medicine’s ethnographic grey literature: to be addressed to medical trainers but also re-addressed and presented to wider, secondary audiences in addition to the medical one.

To give one instance: there was a paper on parent experiences of neonatal surgery by Dr Lisa Hinton (University of Oxford):‘It’s not your baby, you know the baby belongs to the hospital’ (International Conference on Narrative of Health and Illness: http://healthnarratives.org/program/). For, illuminating as this was for all involved in neonatal care, it also challenged as it illuminated what the presenters call the ‘lenses’ that could be focussed on the data they collected: gender and identity theory, transitioning to parenthood, masculinity and more. For what the new parents were denied – autonomy, choice, a chance to bond, an imagined future [of parents of a vital baby] – showed nuanced facets of the transitions involved in motherhood beyond the hormonal and biomedical accounts of being ‘postpartum’, and in fatherhood, beyond masculine definitions and self image, and onto constructions of self, gender and body image.

So this is to propose that as well as ‘interrupted’ there are [denied] ‘transitional’ narratives which speak to the imagined future self (mother, father, active grandparent). Attending to the narratives of those whose lives have been ‘interrupted’, whose telos (end, purpose) has been vitiated, whose transition has been denied, all clearly demands a different narratological hermeneutic from studying the meaning-making in quasi fictional and/or autoethnographic, constructed ‘illness memoirs’ and in avowedly fictional accounts of such. For ‘deficit’ life-course narratives illuminate the denied imagined future, with personal, clinical as well as humanistic implications, in a way that complements or even, I would suggest, supersedes some of the literary texts used in Medical Humanities courses.

The Multifaceted Act of Presenting [with]

Although this Special Issue started with the affordances of Narrative Medicine – attending to the storied life of patients, to the silences and cover stories – and to the ethics and problematics of mediating Broken Narratives, patients do not ‘narrate’, they ‘present’.

And doctors and clinicians do not [only] diagnose; they experience, interact, recognise, fear, sympathise or reject … and judge. They encounter, dialogue, role play.

I challenged a Professor of Medical Ethics and a Theatre Director to debate the similarities and challenging differences between medical and theatre practice, published here as Deborah and Joanna Bowman’s ‘The Seeing Place: Talking Theatre and Medicine’.

One workshop for participants in the Patient Experience conference, by Preben Friis and colleagues’ University of Southern Denmark’s Theatre Lab, did use theatre to invite medical practitioners’ intervention (the resulting article for this issue is ‘Improvising in the Vulnerable Encounter: using improvised participatory theatre in change for healthcare practice’ by Henry Larsen, Preben Friis and Chris Heape). The Theatre Lab uses Boal’s Forum Theatre techniques, used for ‘liberational politics’ in South America and India, as today disseminated from the Jana Sanskriti Centre for Theatre of the Oppressed and its Forum Theatre Festivals and tours: www.janasanskriti.org. Using ‘interventions’ and various ‘actors’, The Theatre Lab set up a scenario: a man with chronic back pain, seen interacting with his doctor and then, decisively, with his daughter who decides he shouldn’t/can’t look after his beloved grandchildren any more. What is this situation about? What intervention is needed? Some said, the back pain, some the disabling effect of the back pain, some the drugs prescribed – and so advised his being referred to a pain clinic.

Others pointed to the irremediable psychosocial effects of the chronic condition, of accepting or refusing to accept (and so being marked down as a ‘resistant’ or ‘non-compliant’ patient) more referrals. Still others saw ‘the problem’ as intergenerational and interpersonal – of the daughter/father roles being reversed and/or as a power struggle over the grandchildren.

Many heated interventions, many impressive scenarios later (played out with audience members) we were left [not just] understanding some of the ramifications of a ‘typical lower back pain chronic patient’ but also the different readings and interventions to be chosen from, the different stories in which we had intervened, the different stories we had stopped being told, as each course precluded others and had, sometimes unappreciated, consequences in terms of interpersonal and family relationship and/or sense of autonomy and selfhood in the teeth of aging.

I was intrigued at the effect on the audience – medical professionals urgent to intervene with what they saw as the answer then inserted into the scene forced to hear the patient’s responses and, uniquely, the response of the audience with different understandings of what the issues actually were. Here was the conference’s mission – to counter-balance the dominant biomedical focus – in a spotlight: expertise was asserted most authoritatively by those with a biomedical pathway to offer.

This workshop pointed to some of the power play and silencing of the patient in clinical settings; the irritation of some of the ‘medical interventionists’ showing how quickly the patient is criticised as ‘resistant’ (as, here, not wanting any more debilitating or perhaps autonomy-denuding treatment). Some of the ‘patient experience’ papers likewise presented cases where care and/or cure broke down with a resulting disenvoicing of those affected (until interviewed by the ethnographers presenting their case). Here the record of the patient experience can do more than call attention to the specifics of the breakdown, but rather provide a case narrative illuminating the other, interpersonal rather than medical, factors that led to the breakdown of communication as well as care. For instance, factors such as the power relations between the parties, the prejudices and prejudgments in play and the role of disenvoicing factors not sufficiently understood and taken into account – fear, shame, the loss of autonomy and so much more – in being a patient.

So many potential stories, so many potential paths for the inter-personal intervention (medical or theatrical) to follow … this article suggests plural facets and possible narratives of the clinical encounter.

Endnote – ethics of re-narration; on being adequate

Renata Kokanović’s article: ‘Listening to what cannot be said: Broken narratives and the Lived Body’ builds on her conference, one where ‘interdisciplinary scholars considered how people with neurological illnesses, psychiatric diagnoses, histories of trauma, cognitive ‘impairments’, and neurodiversity (people diagnosed with autism spectrum disorders) might produce ‘broken narratives’.

She asks ‘What if the narrating subject is herself “disordered”, her speech unintelligible to her audience; her words, images, affects conveying not a linear narrative arc but a shuffled “here and there, then and now”? What if there are gaps in her narrative? Repetitions? Silences?’

Broken Narratives are fragmented, silenced, traumatised. The ethical propriety of the process is rigorous, involving an active and scrupulous attending to and bridging the silences, omissions and the partial. But what of the ethics of collecting such narratives? What of the effects of the process of re-narrating trauma: of sharing a re-experiencing of the trauma?

Two articles reflect on the impact of this task on the ‘subject’: Sarah Ryan, ‘Honouring a life and narrative work; John’s story’ and also on the practitioner caring for the subject ‘disordered’ by psychosis: Lizette Nolte, ‘Weathering a violent storm together – witnessing and co-constructing meaning in collaborative engagement with those experiencing psychosis-related challenges’. This, a deeply thoughtful and respectful account of someone in the grip of a ‘violent storm’ of psychosis asks: what are the problematics, what the threats of disintegration, what the affordances – positive and negative – of narrative for either sufferer or therapist? For if constructing a narrative identity in the teeth of a ‘disintegrating’ condition is a positive, is there not a danger, rather, of locking the broken narrator into the disintegration? And, for all, the very recounting and retelling of trauma involves re-embodying and re-experiencing that trauma.

These were written expressly to consider the central mantra, that the purpose of Narrative Medicine is to honour the stories of illness, but they go beyond that ethical imperative to illuminate what the process can mean to both clinician and ‘broken’ narrator. What can the therapist draw on when faced with a patient’s psychotic ‘violent storm’? An ethnographer caught between a duty to record and witness to and also to investigate a subject’s ‘condition’? An ethicist charged with recording a narrative verdict in a contested life or death decision where that narrative itself may be retraumatising?

The imperative to do justice to, rather than filling in for or ‘completing’, the broken narrative demands that the ethnographer be so much more than a scrupulous recorder. Ethically – and humanly important. For honouring not just the brokenness of the stories but the fragmented and traumatised tellers involves witnessing to a wholeness of human possibility, to vital contribution, to human care and co-presence, to the power of ‘being there’.

The responsibility of the process of mediating and accounting for embodied pain is challenging: in the spirit of Seamus Heaney’s Nobel Prize lecture, ‘Crediting Poetry’, it seems that at times what is needed is ‘something adequate’:

‘We want [from poetry] what the woman wanted in the prison queue in Leningrad, standing there blue with cold and whispering for fear, enduring the terror of Stalin's regime and asking the poet Anna Akhmatova if she could describe it all, if her art could be equal to it’. (Heaney in Jan Parker,’ “Something adequate”? In memoriam Seamus Heaney, Sister Quinlan, Nirbhaya’ in Arts and Humanities in Higher Education’s Special Issue: ‘Humanities and the Liberal University: Calls to Action and Exemplary Essays’ Vol 13, Issue 1-2, pp. 141–148)

‘Adequacy’ is not a term of commendation in literary studies but maybe Narrative Medicine, with Seamus Heaney and Anna Akhmatova, can show Literary Studies that to make a narrative adequate to the particularity of the human condition, resulting from ‘being with’ someone in a crisis or at their end, is the highest of criteria.